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I'm scheduled to receive my first Tysabri infusion on Thursday. I'm terrified and trying to remain hopeful. Maybe this will be the one that does the trick. I'm still not sure what the plan is because I have to come back off of it within a year to reduce the risk of complications, but maybe by then we'll know more of where we should be looking for treatment. Just wanted to give everybody a little update.

Hope everyone is doing well.

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7 Replies |Watch This Discussion | Report This| Share this:New Treatment Starting on ThursdayI'm scheduled to receive my first Tysabri infusion on Thursday. I'm terrified and trying to remain hopeful. Maybe this will be the one that does the trick. I'm still not sure what the plan is because I have to come back off of it within a year to reduce the risk of complications, but maybe by then we'll know more of where we should be looking for treatment. Just wanted to give everybody a little update.

My dear little Hannah, I know this has been such a difficult decision for you to make, but quite honestly, I have thought all along that it is the right direction for you. You have been through so much and yet, I'm quite sure you always come through things with a smile on your face!! We all have a lot to learn from you.

God bless and I don't have to remind you that we're all here for you and can't wait to get an update from you. Take care honey.

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Report This| Share this:New Treatment Starting on ThursdayMy dear little Hannah, I know this has been such a difficult decision for you to make, but quite honestly, I have thought all along that it is the right direction for you. You have been through so much and yet, I'm quite sure you always come through things with a smile on your face!! We all have a lot to learn from you.

God bless and I don't have to remind you that we're all here for you and can't wait to get an update from you. Take care honey.

To make matters worse, we are currently without water. One of the pipes under my brother's house has busted, and this is like, the forth pipe in the last few months to bust. So they're going to run all new pipes to both of our houses. We're on about day four of no hot water and day 2 of no water at all. I've been showering at my grandmother's house, and we've been getting water out of our pool to flush the toilet... Nothing like knowing you can't go to the bathroom to exacerbate your diarrhea. At this point, I'm very thankful for hand sanitizer, and that my grandmother lives two minutes down the road.

To make matters worse, we are currently without water. One of the pipes under my brother's house has busted, and this is like, the forth pipe in the last few months to bust. So they're going to run all new pipes to both of our houses. We're on about day four of no hot water and day 2 of no water at all. I've been showering at my grandmother's house, and we've been getting water out of our pool to flush the toilet... Nothing like knowing you can't go to the bathroom to exacerbate your diarrhea. At this point, I'm very thankful for hand sanitizer, and that my grandmother lives two minutes down the road.

OMG, if it's not one thing, it's another. But I do know where you're coming from. A couple of years ago we had a family Fathers Day party at my daughter's lake house in Michigan. However, a big storm knocked out power for several days and there were 15 of us up there for the weekend. The well, of course, was non operational without electricity. Well, thank God my two oldest grandsons were ready and willing to run back and forth with buckets filled from the lake to keep the toilets "going". What a weekend that was. But we managed, had a lot of laughs (except I had my colitis on high because of the stress!), but again, we did manage. And wouldn't you know it that the power came on as we were packing up to go home after our "unusual to say the least" weekend? We have a lot of laughs about that weekend when we all get together. Lesson learned....can live without water and electricity, but it ain't easy.

Again Hannah, keep us up to date on how you're doing. Love you. And, of course, God bless you!

Thanks for your Reply!

Report This| Share this:New Treatment Starting on ThursdayOMG, if it's not one thing, it's another. But I do know where you're coming from. A couple of years ago we had a family Fathers Day party at my daughter's lake house in Michigan. However, a big storm knocked out power for several days and there were 15 of us up there for the weekend. The well, of course, was non operational without electricity. Well, thank God my two oldest grandsons were ready and willing to run back and forth with buckets filled from the lake to keep the toilets "going". What a weekend that was. But we managed, had a lot of laughs (except I had my colitis on high because of the stress!), but again, we did manage. And wouldn't you know it that the power came on as we were packing up to go home after our "unusual to say the least" weekend? We have a lot of laughs about that weekend when we all get together. Lesson learned....can live without water and electricity, but it ain't easy.

Again Hannah, keep us up to date on how you're doing. Love you. And, of course, God bless you!

Treatment went okay. Had some blurred vision and dizziness on the car ride home, but it may have been issues with blood sugar or who knows what else. Took three sticks to get my IV started... The nurses there said that I needed to get a port put in because I have no veins left. Sigh.

I'm feeling pretty tired today but I'm hoping it's more from stress and everything else than the medication. Scheduled for another one on the 29th.

Thanks for your Reply!

Report This| Share this:New Treatment Starting on ThursdayTreatment went okay. Had some blurred vision and dizziness on the car ride home, but it may have been issues with blood sugar or who knows what else. Took three sticks to get my IV started... The nurses there said that I needed to get a port put in because I have no veins left. Sigh.

I'm feeling pretty tired today but I'm hoping it's more from stress and everything else than the medication. Scheduled for another one on the 29th.

Had my second infusion on the 29th. Only took two sticks this time so it wasn't so bad, but the vein she got it in was too small for the medicine I think because it burned the whole infusion. I'm not sure if it's helping yet or not.

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Report This| Share this:New Treatment Starting on ThursdayHad my second infusion on the 29th. Only took two sticks this time so it wasn't so bad, but the vein she got it in was too small for the medicine I think because it burned the whole infusion. I'm not sure if it's helping yet or not.

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